Australian man with MND faces choice between survival and voluntary assisted dying

A growing policy gap in Australia’s disability support system has left a 71-year-old man with Motor Neurone Disease (MND) confronting an impossible decision about how he will live out his final months.

Tony Lewis (not his real name) was diagnosed with MND – a progressive neurodegenerative condition – last year. The disease has robbed him of much of his ability to speak, eat and move without help. He needs round-the-clock care just to carry out basic functions. Yet under current rules, Lewis is not eligible for full support through the National Disability Insurance Scheme (NDIS) because he first sought help after turning 65.

Australia’s disability support system is tightly split by age. NDIS provides personalised funding and broad supports for people with significant and permanent disability, but most new applicants must be under 65. People older than 65 are instead funnelled into My Aged Care, a system designed for older people that generally provides less intensive support at a lower funding level. For someone with a fast-moving condition like MND, the difference in care and funding can be stark.

Lewis currently receives a limited package of assistance through My Aged Care – a few weekly home visits and showers – and relies heavily on his wife to cover the rest of his care needs. As his condition worsens, his wife’s capacity to provide full support will inevitably diminish. With no realistic pathway to the higher level of support that could keep him alive at home with dignity, Lewis has begun the process of applying for voluntary assisted dying in his state once he feels he has no other option.

What this reveals about support gaps

Disability advocates and clinicians have raised concerns that Australia’s strict age cut-offs and fragmented support systems create unjust outcomes for people with severe disability. Motor neurone disease, for example, typically affects older adults, meaning many people with the condition reach eligibility thresholds too late to access the full suite of disability supports at the stage when care needs are most intense.

Lewis’s case is not isolated. Other Australians with terminal and progressive conditions have publicly shared how inflexible support rules have limited access to essential care well before they meet criteria for full support programs. These structural fractures in the safety net can leave people forced to weigh financial ruin, institutional care, or ending their life on terms defined by law rather than by their own quality of life.

Voluntary assisted dying in context

Voluntary assisted dying (VAD) is legally available in most Australian states and territories for people with a terminal illness who meet stringent medical and procedural criteria. It is not available simply because someone has a disability or high support needs; eligibility is tied to diagnosis and prognosis, decision-making capacity and other legal safeguards.

Still, critics of current policy argue that inadequate access to disability supports – especially for older adults – can make VAD appear like the only viable option for people who otherwise could maintain meaningful lives with the right services in place.

The human side of policy failure

Lewis himself has said he does not want to be a “useless lump of meat” – language that reflects how deeply dehumanising it can feel to be denied the support that would allow someone to participate fully in life. His wife, who currently shoulders most of his care, disputes that sentiment, emphasising his intrinsic worth regardless of physical ability while also highlighting how untenable long-term unpaid caregiving can be without adequate supports.

Lewis’s situation underscores a critical intersection: ageing, disability and support systems that have not kept pace with the lived realities of people with high support needs.

These gaps are not just bureaucratic; they shape the choices people feel they have left.